Summary:

Holding Our Own: Embracing the End of Life is a documentary film that shows aging and dying as anything but morbid, and death as the final healing in the hospice way. Art and music are combined as a way to bring people into a subject that they'd rather resist.

The film begins with an art opening in New York City and with the commentaries of curator and others as they view Deidre Scherer's large fabric and thread paintings (see annotation of "Surrounded by Family and Friends")--of people at the last moments of their lives. The artist has captured for us, even in the midst of suffering, genuine moments of tenderness.

An interview with palliative care physician Ira Byock guides the conversation, presenting a most refreshing doctor's perspective. The commentaries of hospice personnel, artist, and members of the Hallowell singing group punctuate the profoundly intimate scenes, filmed in institutional settings and in homes. The singers, who sing to the dying patients, see beyond their own fears; they recognize and want to honor dying persons for who they are: "This is not about singing it right for an audience...its about being totally present for the people you're singing for...and wanting it to be a gift." They model the magic of human connection called by Byock "the ground substance of therapeutics" The healing is mutual: "I can feel sad, cry, I can feel a heavy heart...but it's not depressing....It's a wonder...you can feel love, joy, sorrow, but so alive.... you feel the blessing of your own life."

Two additional segments, "More about Deidre Scherer," and "More about the Hallowell Chorus, and a concise study guide are offered with the DVD.

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Summary:

This groundbreaking international film documents the positive impact of art and other creative activities on people with Alzheimer's disease. The film's intention is to change the way we look at the disease.  It does just that.  Brilliantly.

Narrated by the actress Olivia de Havilland, the film opens with a 96 year old woman reading classical music as she's playing at the piano. Her music becomes gentle background sound track for the first vignette, a group of people intently viewing and commenting on Seurat's canvas, "Sunday in the Park."  From their intense concentration and voiced observations, one would never believe this was a group of nursing facility residents on an outing to the Chicago Art Museum.

Throughout the film--at the circus, visiting museums, or in painting workshops conducted at day care centers, nursing homes and assisted-living facilities in Europe and the US-- the hopeless, fatalistic, nobody's there stereotypes of Alzheimer's sufferers is unequivocally denied.  We continually witness people with serious memory problems being brought back into active communication and a rich quality of life.  This is more than busywork arts and crafts: trained professionals knowledgeable about both art and Alzheimer's are providing essential treatment "just as effective if not more so than the drugs."  The benefits of the non-pharmacological along with the pharmacological not only extend life, but create a life worthwhile, where people find meaning and connection.
 
In direct interview, voice-overs and interacting with "patients" and their family members, eminent experts from multiple medical fields - neurology, gerontology, psychiatry- punctuate the film reviewing the latest technologies and concurring that the essence of the person lives on. The latest brain research provides evidence that the parts of the brain related to emotions and creativity are largely spared by the disease and that our technologies for assessing dementia --dealing with sequencing things, dates in order, and what one did this morning--rely on short term memory which is totally irrelevant when enjoying a masterpiece or listening to a symphony.  The documentary also includes comments from art therapists, occupational therapists, directors of specialized care facilities, but the film is anything but talking heads.  The cutaways and extensive footage of the care giving staff and specialists interacting emotionally and physically, visibly bonding with the residents and family members is sincere, loving and inspiring professionalism.

The inspiration for the film and project is filmmaker Berna Huebner's mother, Hilda Gorenstein, once an accomplished painter known as Hilgos.  In one of Huebner's visits to the nursing home, she asks "Mom, would you like to paint again?"  Quite unexpected came the reply, "Yes, I remember better when I paint."  Learning this, the staff psychiatrist who had been prescribing small doses of a tranquilizer for her apathy, anxiety and agitation suggested Huebner enlist art students from the Chicago Museum school to help her mother to begin painting again.  We are not spared the slow and sometimes discouraging process as Mrs. Gorenstein comes alive regaining mobility and communication skills and interacting--bonding-- with the art students.  The film is replete with her colorful paintings created in the next few years until her death at age 93.

"The creative arts are a doorway.  Once that doorway is opened ... things are tapped ... that are genuine and active and alive that don't get tapped in our normal day social interactions when we sit at a table and make conversations over a meal or we read a newspaper article and then talk about the headlines of the day.... The creative arts bypass the [cognitive] limitations and simply go to the strengths. People still have imagination in tact all the way to the end of their disease."

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Summary:

As Audrey Young describes her process of becoming a compassionate internist in a besieged public hospital, she simultaneously argues for turning the hospital's patient care and financial practices into a model for improving health care in America.  Young, a compelling storyteller, first entered Seattle's Harborview Medical Center in 1996 as a third-year medical student on trauma surgery service.  She completed a residency there in general internal medicine and stayed on as an attending for six more years.  She stayed, she tells us, because she met physicians "committed to a vision of equality" who were "the sort of people I hoped to become" (xiii).   She also "fell in love" with "the story of a unique place" (xiii).  Young's stories of that often chaotic place, where ambulances regularly transport homeless, indigent, addicted, and mentally ill refugees from neighboring private hospitals, emphasizes the ways the Harborview staff manages to treat patients with dignity and to choose an ethic of hope in the face of dire circumstances.           

We quickly learn that at Harborview compassion is expressed concretely as actions toward patients.  Michael Copass, known as "the mostly benign dictator of emergency operations," pronounced the core of these actions in what came to be known as his commandments:  "1. Work hard.  2. Be polite.  3. Treat the patient graciously, even if he is not the president of the United States" (9).  Politeness always meant asking "'How may I help you, sir?'" regardless of the patient's social status or addiction history.  Politeness sometimes meant finding a way to reach the patient who regularly threatened the staff.  Young finds ways and creates a therapeutic bond.  But working hard and treating patients considerately also took measurable forms, such as not allowing emergency patients to wait.  Facing a flurry of admissions, the Emergency Department (ED) staff interpreted a young Ethiopian's complaints about pain as a drug addict's ploy.  Because Young glanced at the admissions board and noticed that he remained unattended for three hours--far longer than Copass could tolerate--she jumped into action.  He suffered, she discovered, from a collapsed lung. 

However, Young moves her narrative beyond individual doctor and patient encounters and into the larger, interrelated social and financial structures in which medicine is practiced.  For instance, she links meager funding for drug and alcohol rehabilitation programs with expensive ED admissions and rising healthcare costs.  In the chapter "Bunks for Drunks," Young visits an experimental residence that houses homeless addicts in furnished studios with private baths and cooking appliances.  Although residents can keep alcohol in their rooms and elect not to participate in the home's social services, including counseling, alcohol consumption and ED admissions decrease.  While the chapter points out the cost savings of such arrangements, Young further urges readers to value the dignity residents experience there.

In "Black Friday," Young details the hospital's tense, but ingenious responses to a Mass Casualty Incident, the result of carbon monoxide poisoning, which almost depleted the resources of all of Seattle's medical centers.  The final chapter, "A Vision," outlines how Harborview has tried to succeed as both a charitable institution and a business, as a provider of both indigent and luxury care, with the hope that others will follow the medical center's example.  However, in presenting her recommendations for "health justice," Audrey Young also makes the case that "seemingly ordinary citizens" are implicated in healthcare reform (231).  To enable their informed participation in making changes, Young includes an appendix with further readings and another that lists strategies for effecting reform.  

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Summary:

The Bonesetter's Daughter is divided into two major stories. One is the story of Ruth, an American-born Chinese woman, a ghostwriter for self-help books, in a relationship with a white man, stepmother to his two teenaged daughters, and finally, daughter of LuLing, who Ruth fears is becoming demented. Ruth begins to realize what her mother's memory loss means to both of them: for her mother, an increased need for attention, for Ruth, disappearing stories that could help Ruth understand her family and render a feeling that she is part of a larger story.

The second major story is that of LuLing, which Ruth discovers in the form of documents LuLing had given her several years earlier, written in Chinese, LuLing's attempt to hold on to fading memories of her life in China. This story within a story--LuLing's life in a village called Immortal Heart; the secrets passed on by her nursemaid Precious Auntie (who, we learn, is also her mother); a cave where bones are mined that may be the teeth of Peking Man; tales of ghosts and curses--parallels in many ways the present-day issues confronting Ruth: an inability to speak up to her partner and his two daughters; why she remains a ghostwriter, without a voice of her own; an increasingly problematic and confusing relationship with her mother. Answers to both women's puzzles and problems unfold as LuLing's story is translated in its entirety, providing answers through memory and words that could not be spoken, only recorded.

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Summary:

The Caregiver’s Tale: Loss and Renewal in Memoirs of Family Life is divided into three parts. The first section, “Care Situations,” provides the cultural context of illness and disability and focuses on four common family care situations: cancer, HIV/AIDS, mental illness/chemical dependence, and dementia. The second section of the book, “Care Relationships,” highlights patterns of caregiving, including caring for children, sibling care, couple care, and parent care. The third section of the book contains well over 100 annotations of memoirs of caregiving, each approximately a half-page in length.

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This film documents the quiet devastation of Alzheimer's disease from a daughter's perspective. Using home movie clips and up-close footage of conversations with her 84 year old mother (Doris Hoffmann), a skilled film maker/daughter (Deborah Hoffmann) provides a sustained and poignant documentary of Alzheimer's devastating ability to transform a vibrant and intelligent woman's life.

Interspersed with conversations that reveal her mother's disoriented recollections of the past and the glitches and confusion of daily life routines, home movies and other artifacts provide a contrasting impression of this woman's family and life then and now. Captions and clever title cards are used to organize events and to add gentle humor.

Frances Reid, the camera woman, is mentioned from time to time as someone known to both Deborah and Doris; eventually and without special emphasis, we learn that Frances and Deborah have a lesbian relationship and how Doris adjusted to the couple over the years.

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Summary:

Dominic Birdsey's identical twin, Thomas, is paranoid schizophrenic. With proper medication he can work at a coffee stand, but occasionally he has severe outbreaks. Thinking he is making a sacrificial protest that will stop the war in the Middle East, Thomas cuts off his own hand in a public library. Dominic sees him through the ensuing decision not to attempt to reattach the hand, and makes efforts on his behalf to free him from what he knows to be an inadequate and depressing hospital for the dangerous mentally ill.

In the process, Dominic reviews his own difficult life as Thomas's normal brother, his marriage to his ex-wife which ended after their only child died of SIDS (Sudden Infant Death Syndrome), and his ongoing hostility to his stepfather. First in Thomas's interests, and then for his own sake, he sees a gifted Indian woman employed by the hospital as therapist. She helps Dominic come to understand Thomas's illness and the family's accommodations or reactions to it in terms of the whole family system.

In the course of treatment, Dominic discovers sexual abuses taking place in the hospital and helps to expose the perpetrators. He succeeds in getting Thomas released, but Thomas soon commits suicide. After Thomas's death Dominic finds out about their birth father--a secret their mother had shared with Thomas, but not with him.

He also learns that the woman he has been seeing is HIV-positive. She asks him to keep her baby if she dies. At first he resists, but later, having found his way back into relationship with his wife, he takes the baby. The book ends with several healing events that leave Dominic able to cope with the considerable loss, failure, and sadness in his personal and family history.

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The narrator, who has been a counselor at a summer camp, brings a friend home to meet her computer-wizard older brother, Eric, but finds him acting very strange--overprotective, defensive, and aggressive. Later his inexplicable behavior shows up at the dinner table. He is unreceptive to parents' inquiries. Readers learn some of the delusional thoughts from italicized passages interspersed with the narrative of a family recognizing mental illness and making treatment decisions.

Eric is hospitalized after an episode in which he threatens the family with a kitchen knife. He is released on medication in a matter of weeks, but continues to behave strangely if not dangerously--he asks his sister at one point if she knows any "secret numbers"--and she realizes his new condition is not simply going to go away, but has opened a whole new chapter in family life and requires new and careful adaptations.

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This memoir of a lifelong struggle with bipolar disorder, complicated by eating disorders and alcoholism, records the internal experiences of mania, confusion, depression, delusion, anxiety, terror, wild impatience, discouragement, and at times clarity and resolve that alternate in her life of recurrent struggle.  Diagnosed somewhat belatedly as rapid cycling type 1 bipolar disorder, her disease drove her to one disastrous coping strategy after another until she was hospitalized for her eating disorder and for cutting herself.  After years of intermittent hospitalizations and encounters with several incompetent psychiatrists as well as a few who were consistently helpful, she has come to understand exactly the kind of help she needs-at times trusting others' assessments of her condition more than her own, accepting supervision, abstaining from all alcohol-a critical factor in avoiding psychosis.

Her doctors continue to recalibrate her complicated drug therapies, and her moods and control remain precarious, but she has learned to live with a disease that seems still to be poorly understood, accept the limits it imposes, and handle it with intelligence, humility, and even at times a wry note of humor.  She has learned to accept help from the husband whose love survives recurrent unintentional abuse, and from parents and friends who remain supportive.  She ends the memoir on this note of acceptance, appending to it a list of facts and statistics about bipolar disorder designed to help situate it for the reader relative to other diseases and disorders.

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Summary:

Each poem in this collection is preceded by brief comments both by the author/patient and by her psychiatrist.  Together the poems chronicle incidents in the interior life of a woman who has lived with schizophrenia for 35 years, been hospitalized, changed doctors and medication, undergone intense feelings of isolation, and also has experienced remarkable support and love from a twin sister and a few loyal friends.  The poems range in tone from matter-of-fact tellings of psychotic episodes to reflections on relationships, both personal and professional, that have been important in the course of treatment.  The book is organized as a chronology that traces the trajectory of diagnosis, illness, treatment and recovery; the final section is entitled "Beginning Again."  Read in sequence, they give a rich sense of the writer's life, struggles, resilience, and unusual self-awareness.  

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